Antoinette Ferraro, Trustee and Treasurer of Friends of the Belarusian Children’s Hospice (UK) (Friends of BCH), wrote:
I have just returned from a visit to a cold and very snowy Minsk where I attended a splendid two-day conference entitled ‘Abilitation: helping disabled children to achieve their potential’
. Paediatric palliative physiotherapy is a new concept in Belarus and does not translate directly. It is called ‘abilitation’ there.
The conference was organised and sponsored by Friends of BCH. For the past twelve months, the charity has been running a pilot programme to introduce British-style physiotherapy to ten children of varying ages at the Belarusian Children’s Hospice (BCH) and the Republican Clinical Centre for Paediatric Palliative Care (Forest Glade) in suburban Minsk.
Two of our trustees, Chairman Daryl Ann Hardman and Project Director Deb Hunt (pictured with Pam and Sue), were the key players in bringing this conference about. The idea behind it was to spread the word to doctors, nurses and other health professionals in Belarus that, given a gentle child-centred approach and a lot of patience, children with disabilities can achieve their best in every direction, thus improving quality of life for them and for their families too.
Most Belarusian children with severe or progressive disabilities have not had access to such treatments before. In the past, only the more aggressive, less empathetic and restricting style of ‘physiotherapy’ inherited from Soviet medicine has been available. Up until the start of our project last year, one team member at BCH had some skills and knowledge of western style therapy but she needed help to tailor it to individual children. Other team members had very limited skills but they were keen to learn how best to develop their service. You can read about the significant progress made by the project so far here
My first observation at the conference was the confidence and pride with which the newly trained BCH and Forest Glade staff were able to tell the 50 delegates what they had learned about ‘abilitation’ in the past year. They shared case studies of children in the pilot programme. This included video clips of the children's progress and their obvious enjoyment interacting with age-appropriate toys and games. Some children were able to use a positioning chair for the first time which enables them to join in a family meal or play with a toy on a tray in front of them. Our trainer, Friends of BCH volunteer physiotherapist Pam Parker from Christophers Hospice near Guildford, stressed the importance of correct positioning and the principles of good seating not only to improve posture but also breathing, digestion and general outlook on life! Friends of BCH has now funded the purchase of six of these chairs. The Polish manufacturer brought along examples of these chairs and standing frames to the conference to show delegates.
Sue Wickings, another Friends of BCH volunteer and an occupational therapist from Shooting Star Chase Children’s Hospice Services, introduced the idea of communication with non-verbal children. She taught us the basics of the sign language Makaton. The Belarusians had never experienced such a thing before! At first they were reluctant to participate but with some gentle persuasion and while watching a video of ‘Hello, goodbye’
by the Beatles most of them finally joined in and embraced this novel to them way to interact with disabled children.
Various speakers emphasised the importance of
• correct handling and positioning of children
• assessing the particular needs of an individual child and setting small but achievable goals eg to be able to stretch out a hand to touch a toy at arm’s length
• documenting progress and keeping accurate records
• abilitation continuing ‘24/7’, that is, it should not be just the abilitolog (our descriptive name for the new-style Belarusian physiotherapists) who provides the stimulus to help the child achieve his or her potential but other members of the support team including parents and siblings should do so too.
Most importantly, it must always be remembered that the process should be child-centred and FUN!
On the second day of the conference, all the delegates participated in three practical sessions. The first covered various aspects of lifting and handling patients including how to turn them in bed, to raise them from a lying to a sitting position and move them from a bed to a wheelchair. I was surprised at how few of the carers were familiar with the correct techniques to achieve this both to make it comfortable for the disabled child and to protect their own backs! In the second session, the concept of tactile stimulation was introduced and was accompanied by different styles of music. The third session consisted of the telling of a ‘Sensory Story’ using Michael Rosen’s ‘We’re going on a bear hunt’
. This was received with much amusement by the Belarusians for whom this experience was a first!
All in all, the two days provided so many new ideas to expand and improve the care of disabled children that there was a danger of overload. I am certain that the Belarusian delegates had their eyes opened in very many ways and they were keen to embrace a lot of what they had experienced. One can only hope that they will utilise some of these British methods of abilitation in their various establishments and that many more children will benefit in the future.
The conference delegates and presenters also attended a reception at the British Embassy in Minsk where Her Majesty’s Ambassador Fionna Gibb warmly welcomed everyone and provided very pleasant surroundings for some relaxed exchanges of ideas as well as delicious canapes and drinks.
An excellent interpreter played an invaluable role in the success of the whole conference.
I am proud to be a trustee of Friends of BCH which is pioneering this modern approach to helping children in Belarus with long-term disability or life-threatening conditions and very grateful to our team of Daryl Ann, Deb, Pam and Sue for planning and achieving a very memorable two days in Belarus.
Antoinette's visit to Minsk was self-funded.
HMA Fionna Gibb (front row second left) and delegates at the British Embassy in Minsk